Introduction

Colorectal cancer, cancer of the colon or rectum, develops in the large intestine in the digestive tract. The disease often begins as a benign (non-cancerous), abnormal growth or tumor in the lining of the colon. These growths, which are called intestinal polyps, colorectal polyps, or adenomas, can become precancerous and then cancerous.

If your doctor suspects that you may have colorectal cancer, or you have been recently diagnosed with colorectal cancer, you more than likely have many thoughts running through your head and may feel unable to think clearly. The Colorectal Cancer Association of Canada has designed a comprehensive list of questions for patients to ask their treating physician according to the set of circumstances in which the patient finds themself as well as the modality of treatment sought.

Regular communication with your doctor is important in making informed decisions about your health care. Whether you are dealing with a suspicion, diagnosis or coping with the side effects of chemotherapy, it is important to know what questions to ask your doctor so as to best equip yourself in the prevention, management and treatment of the disease. The more information you have about colorectal cancer, the easier it will be to make important, informed decisions.

Click on one of the following headings to access a list of physician-directed questions designed to assist the patient during their communications with their treating physician.

I. Physician-Directed Questions Regarding Screening for Colorectal Cancer

Introduction

Click to print entire section

Screening for colorectal cancer is recommended for men and women beginning at age 50. Some of the screening tests designed to help diagnose colorectal cancer include: colonoscopy, fecal occult blood test (FOBT) and flexible sigmoidoscopy. The benefits and risks of these screening methods vary. Discuss with your doctor which test is best for you. Since every patient has a unique medical history, it is essential to talk with their doctor about their personal risk factors and/or experience with colorectal cancer. By talking regularly and openly with the doctor, one can take an active role in their care.

Appearing below is a list of questions to ask the doctor about screening for colorectal cancer. Mark the questions you would like answered, and take them with you to the next medical appointment.

Click to print questions

Questions To Ask Your Doctor About Colorectal Cancer Screening

Based on my family and medical history, do I have any of the risk factors that would make me likely to develop colorectal cancer?
Are my children or other relatives at higher risk for colorectal cancer?
If I have any of the risk factors, are there any changes I can make to place me at less risk?
What are the signs and symptoms that I should be aware of?
Should I have any of the tests that would screen me for colorectal cancer?
If so, what screening test(s) do you recommend for me?
How do I prepare for these tests? Do I need to change my diet or my usual medication schedule?
What is involved in the test? Will it be uncomfortable or painful? Is there any risk involved?
When and from whom will I obtain my results?
If I am to have a colonoscopy or sigmoidoscopy, who will do the exam?
Will I require someone with me on the day of the exam?
How often will I be requiring a colonoscopy?

To access additional information on the screening of colorectal cancer, please visit the Colorectal Cancer Association of Canada’s website at www.colorectal-cancer.ca/en/screening/screening-tests/

II. Physician-Directed Questions Regarding Suspicion of Colorectal Cancer

Introduction

Click to print entire section

If your doctor suspects that you may have colorectal cancer, the following list of questions may aid in the discussion that takes place between you and your doctor when addressing the suspicion and subsequent course of action.

Click to print questions

Questions To Ask Your Doctor About Suspicion of Colorectal Cancer

What makes you suspect that I have colorectal cancer?
What other medical conditions might be causing my symptoms?
What are the common risk factors for colorectal cancer?
Am I at increased risk for the disease? Why or why not?
What types of examinations and diagnostic tests are performed to diagnose cancer of the colon or rectum?
What do these tests involve?
How should I prepare for these colorectal cancer tests? Instructions: _____________________________________________________________
Will I be able to drive myself home after my test(s) or will I require someone to drive me?
Will I require any special assistance at home after undergoing these diagnostic procedures?
Should I call for my test results or will someone contact me?
Date to Call: _______________________________________
Telephone Number to Call: ____________________________
Other Questions:

III. Physician-Directed Questions Regarding the Diagnosis of Colorectal Cancer

Introduction

Click to print entire section

If you have been diagnosed with colorectal cancer, it is not surprising that you would have plenty of questions before you start treatment. Being well-informed will help you know what to expect at each stage of your cancer care plan. Fighting colorectal cancer requires planning for and engaging in numerous discussions with your treating physician. Being treated for cancer often means that you may have more than one doctor. Your relationship with your treating physician and the other members of your cancer care team constitutes a key part of your care. It is usually best to have one doctor who coordinates all of your care though. This doctor should be someone you feel comfortable with, someone who listens to your concerns and answers all of your questions. Your doctor or oncologist (doctor who specializes in the treatment of cancer) will explain your diagnosis, health status, treatment options, and progress throughout therapy.

There will also be nurses working with your doctor who have special training to care for people with cancer. They are there to assist you with your treatment or any side effects you may experience. In many cases, the nurses can answer your questions as well. Nurses will also assist in helping you get the answers you require from other members of your health care team.

Like all successful relationships, your relationship with your oncologist is a two-way street. It is your responsibility to ask questions and learn about your treatment and health – to be an active part of your cancer care team. Hence, a list of useful diagnosis questions have been prepared according to the modality or type of treatment being employed as well as other concerns you may wish to have addressed during your discussions with the respective oncologist, so as to fully prepare and arm you. If possible, bring a spouse, friend or relative with you. They can take notes from your conversation with the doctor. With the doctor’s permission, you may even tape record your discussion with the doctor so you can replay the answers to your questions at a later time. Be sure to bring a pen and pad with you, as you more than likely will not remember all the answers to your questions.

The following questions are a good place to start your discussion with the treating oncologist. You may not need to ask all of these questions; ask whatever you feel is important to get the information you need right now. You may wish to add other questions that are important for you personally to your list as well.

A: Upon Receiving A Diagnosis of Colorectal Cancer

back to top

Upon receiving a diagnosis of colorectal cancer, patients often find themselves shockingly unprepared, not knowing what to ask or how to seek out information in respect of their disease. Below is a list of diagnosis questions with accompanying information to help you prepare for your next visit with the physician followed by a more extensive list of questions for you to ask at either a later date or at the same appointment.

Click to print questions

What type of colon cancer do I have?

What stage is my cancer?

What are my treatment options?

www.colorectal-cancer.ca/en/just-the-facts/what-cancer/

www.colorectal-cancer.ca/en/treating-cancer/treatment-cancer/

What is my prognosis?

What doctors do you recommend?

A gastroenterologist or medical oncologist to provide a second opinion
A medical oncologist to help you settle on a course of treatment
A colon surgeon to remove the tumor (surgical oncologist)
Surgeons who specialize in other organs if the cancer has spread to the liver, lungs, brain or peritoneum (surgical oncologists)

The following list of questions is to be directed to the physician who is diagnosing or has diagnosed your colorectal cancer. Ordinarily, such a diagnosis is delivered by the gastroenterologist who performed your colonoscopy or can be delivered by other physicians who may accidentally have discovered your disease, such as an Emergency Room doctor. Therefore, your questions will be directed to the physician who delivers the diagnosis.

Click to print questions

List of Questions Upon Diagnosis

Will you permit me to audio-tape our consultations?

What type of colon cancer do I have?

Where exactly is the cancer located in the colon?

Are you able to tell me if my cancer has spread beyond my colon?

Are you able to tell me the stage of my cancer?

If not, what are the tests that I will require to determine what stage my cancer is in?

Are there other tests that need to be done before we can decide on treatment?

Are you able to tell me how quickly the cancer is likely to grow?

Will it make a difference if I were to change my diet?

Does my diagnosis mean that my blood relatives are at higher risk for colorectal cancer? Should they talk to their doctors about screening?

What are my treatment options based on my diagnosis?

What treatment option do you recommend? Why?

What is my prognosis based on type and possible stage of colorectal cancer?

What other doctors will I be required to see for the treatment of my disease? Should I see a surgeon? Medical oncologist? Radiation oncologist? Should these doctors be involved in planning my treatment before we begin? Specialists:____________________________________________________

How do I contact the members of my health care team? Telephone Numbers to Call:
_______________________________________________________

Am I a candidate for surgical removal of the colorectal tumour? If so, what type of surgical procedure do you recommend?

If so, should I have surgery by a certain date?

How long can I safely delay surgery while trying to decide upon a course of treatment and physician referrals?

Should I obtain a second medical opinion before beginning cancer treatment? Why or why not?

B: Questions Regarding Additional Testing

back to top

If your diagnosis was delivered by the doctor who performed your colonoscopy (gastroenterologist), they may wish to pursue additional testing to either properly stage the cancer or determine the full extent of the disease resulting from disease metastasis (spread of the disease). This additional information is critical in helping to decide on a treatment plan.

Click to print questions

Additional Testing - List of Questions

What other tests are you recommending for the assessment of my disease?
What extra information will you glean from each of these tests?
How soon will I receive the results of these tests?
What does each of these tests involve? How should I prepare for them?
How long will the tests take?
Will I be able to drive myself home immediately following the tests?
Are there any side effects or complications associated with any of the diagnostic tests?
If any one of the tests detects an abnormality, what will be the course of action? Will abnormal tissue be removed during the procedure?
Aside from the standard of care imaging available such as a CT scan and MRI, would I benefit in accessing a PET/CT for the detection of my disease elsewhere in the body? Why or why not?
If so, how would I access a PET/CT?
Are PET/CTs funded by the government or any other agency for the detection of colorectal cancer?
If not, how much would I be required to pay in order to access one?
Where can I access a PET/CT?
Will you provide a referral/requisition for the administration of a PET/CT?

C: Treatment of Colorectal Cancer

back to top

By the time a patient is engaging in a discussion regarding treatment options, it is likely the patient may have been referred from their gastroenterologist to a medical oncologist (to access systemic therapy – drugs infused throughout the body), surgical oncologist (to discuss surgical candidacy) or radiation oncologist (to pursue radiation therapy).

Patients may be referred to either one of the above or all depending upon the stage of the cancer. There are three types of standard therapy when treating colorectal cancer: surgery, chemotherapy and radiation therapy. Newer types of treatment have evolved and continue to be tested in clinical trials. These newer types of treatment, called biological therapy, specifically target cancer cells.

Colon or rectal surgery is the most common treatment for colorectal cancer. In ideal situations, where the cancer is found at a very early stage, a doctor can remove the tumor with a colonoscope during a colonoscopy. Most the time, however, colorectal surgery is required. Chemotherapy is sometimes recommended for stage 2 colorectal cancer, and usually recommended for stage 3 and stage 4 colorectal cancer in combination with biologic therapies or as standalones. Radiation therapy is also used in colorectal cancer treatment, especially in the treatment of a rectal tumor that requires shrinkage, as well as in the treatment of colorectal cancer metastases appearing in distant organs such as the liver.

A list of general treatment-related questions has been compiled for patients wishing to explore and engage in a discussion regarding their treatment options after diagnosis. A more extensive and specific list of questions are provided according to the modality of treatment recommended/pursued. Identify those questions pertinent to your case and ensure that your questions and any concerns you have are properly addressed before commencing treatment.

Click to print questions

Treatment-Related Questions to Ask Your Doctor (General)

Is it alright if I audio-tape our conversation?

Is there a cure for my condition? What is my prognosis, as you see it?

How does my past medical history affect which treatments are options for me?

Based on the stage of my disease, what is your recommended treatment option?

What is the goal of treatment?

How long will I have to undergo the treatment?

What are the names of the drugs I require and what are they for?

How long does each course of the treatment take?

What are the potential benefits and drawbacks of this treatment?

What are the common side effects of the recommended treatment?

What should I do if I experience severe side effects? Telephone # to call:____________________________________________________

What can I do to safeguard against the onset of side effects?

How will you know that my treatment is working?

How can I expect to feel during treatment?

How long should it take the treatment to work?

What happens if I miss a treatment?

How will my condition be monitored after my cancer treatment?

Can I work during treatment if I wish to do so?

What other types of colorectal cancer treatments are available?

What are the benefits, disadvantages, and possible complications of chemotherapy, radiation therapy, and biological therapy (immunotherapy) for colorectal cancer?

What do these colorectal cancer treatments involve?

How often should I be seen for followup appointments?

Why do I need blood tests and how often will I need them?

Is combination chemotherapy a treatment option that is appropriate for me?

If I decide to receive combination chemotherapy, what is my chance of remaining disease-free?

If I decide not to receive combination chemotherapy, what is my chance of remaining disease-free?

What will the treatment schedule look like in terms of how many days I will need to come into the clinic, how long I will have to stay each day, and how many days after a treatment I might need to take off work or limit other plans?

Are there any “high-risk” features of my tumor that make it more important for me to consider combination chemotherapy?

Is the recommended therapy covered? If not, will my third party insurance plan cover the therapy?

If I do not have third party coverage, what are my options?

Which center would be able to provide the best treatment for my cancer?

When should I start treatment?

Is it ok to wait to start treatment as a result of ….?

Will I need to spend time in the hospital? If so, for how long?

If I have treatment, could my cancer return?

For each possible treatment option, what are the chances that my cancer might come back?

If the cancer comes back, can it again be treated successfully? If so, what treatments are available to me in the event of a recurrence?

For Stages 1, 2, and 3: Should I have additional treatment, even if the cancer is removed by surgery?

Stage 4/Recurrent/Relapsed: Will the results of the treatment be worth the side effects I may suffer?

Can I choose a less aggressive treatment so as to keep me comfortable?

What will happen if I refuse further treatment?

What happens if I react badly to treatment and need to stop? Will we try something else instead?

What possible long-term effects might occur as a result of the treatment?

Once I finish treatment, how will I be monitored for recurrent cancer?

What followup tests will be done and at what intervals?

Do you regularly measure CEA (carcinoembryonic antigen) levels? If so, how often? What will you do if this level increases?

If other specialists take part in my care, who will coordinate my entire treatment program?

If I don’t feel ill, does this mean the treatment is not working?

Are there any steps I should take during or after treatment to help myself stay healthy?

Are there any alternative or complementary therapies that I should consider?

Does my colorectal cancer diagnosis mean I am at higher risk for any other type of cancer?

Is a clinical trial appropriate for my situation? Why or why not? Would I receive better medications?

What types of experimental colon cancer treatments are being developed?

Can you recommend a local or online support group for people who have colorectal cancer and for their families to me?

For younger patients: Will the treatments affect my ability to have children? Is there a way to protect my fertility?

What is the best time to call you if I have a question? Telephone #________

(i) Surgery-Related List of Questions

Click to print entire section

In patients with potentially curable colorectal cancer, a properly performed surgical operation is essential for optimal results. In the majority of such cases, operative intervention involves a resection (removal) of the primary cancer and regional lymph nodes, along with the removal of sections of normal bowel on both sides of the cancer when treating colon cancer (see diagram below), and the removal of the mesorectum (the tissue attached to and supporting the rectum) when treating rectal cancer (see diagram below).

Surgery for Colon Cancer - Colectomy

Illustration of colectomy surgery for colon cancer

During a colectomy, surgery for colon cancer, the cancer and nearby tissue is removed and the remaining sections of colon are rejoined.
Source: http://www.riversideonline.com/health_reference/Cancer/DS00035.cfm

Illustration of Total Mesorectal Excision for Rectal Cancer

In TME, the rectum and the mesorectum are removed. The mesorectum is the area of fatty tissue below the rectum that contains lymph nodes, which are the most common area for the cancer to spread. Source: Oncolink http://oncolink.com/types/article.cfm?c=5&s=11&ss=605&id=9457&p=3

There are several different types of surgical procedures used in the treatment and management of colorectal cancer. The referenced surgical procedures appearing above are merely two commonly employed surgical treatment of colorectal cancer. The size and spread of the cancer, as well as the experience of the surgeon determine the appropriate procedure. Palliative colorectal cancer surgery is treatment that is intended to relieve symptoms, such as pain, but is not expected to cure the disease because of the macrometastases identified in distant organs upon the discovery of the primary colon or rectal tumor. The main purpose of palliative treatment is to improve the patient’s quality of life. Approximately 20% of patients with colorectal cancer already have distant metastases at the time of diagnosis (JAMA, Vol. 287, No. 3, pp.321-328). In this group of patients, palliative colorectal resection is generally recommended to prevent bleeding, obstruction and symptoms related to local organ invasion.

The following list of questions is meant as a guide to issues you should discuss with your surgeon and medical team before undergoing surgical treatment of colorectal cancer.

Physician-Directed List of Surgically-Related Questions for Colon/Rectal Tumors

Click to print questions

Questions to Ask Before Surgery:

May I tape record our discussion?

Do you have a specialty in surgical oncology?

What is the stage of my cancer?

Is surgery the standard therapy for my stage of disease?

Why do you recommend surgery for my colon/rectal cancer?

What type of surgery do you recommend (conventional vs. laparoscopic)?

Can you describe the surgery that you recommend?

What is the goal of surgery?

What are you planning to remove during surgery (the colon, nearby colon tissue, rectum, mesorectum, lymph nodes)?

How many times have you performed the recommended surgery?

Will you personally be performing the surgery?

What is your success rate and how do you define success?

What is your experience with complications? What should I do if I develop complications after surgery? Tel. # to call: _________________________

Is a biopsy part of the surgery?

How soon after surgery will I have all test results and a firm diagnosis?

Will I need blood transfusions and can my family donate blood?

Why is bowel preparation necessary for abdominal surgery?

Will I have a catheter to drain my bladder and, if so, how long will it be in?

Will you perform a pelvic lymph node dissection?

I have read that at least 12 lymph nodes need to be examined to accurately stage colon and rectal cancers, do you routinely accomplish this? Can more than 12 lymph nodes be examined? If so, how many are you willing to examine in excess of 12?

What happens if one or more of the lymph nodes is found to be positive?

Do you use drains and how will you decide?

How long will I be unable to eat?

Will I have a nasogastric tube (NG tube) after surgery?

What are my options for pain control after surgery?

Do you think I will require a temporary or permanent colostomy? If so, what will this involve? (If yes, proceed to List of Questions in Respect of Colostomy Found Below.)

If you find that the disease is more extensive than originally believed, what will you do?

Considering my age and general health, am I at a higher or lower risk for complications?

What might my recovery involve? Restrictions: _______________________ Date to resume normal activities: _________________________

What are my options besides surgery?

Are there clinical trials for my stage of disease?

Will I require adjuvant (post surgical) therapy after my surgery?

Are there any protocols for neoadjuvant (before surgery) therapy for my stage of disease?

What are the pros and cons of each type of colon/rectal surgery for the treatment of my particular cancer?

What diagnostic tests are needed prior to surgery and how will these assist in surgical planning?

Do you feel it is appropriate to perform surgery even if there are metastases present in more than one place? If yes, under which conditions?

Who will give me information about how I should get ready for surgery and a hospital stay? How long will I be in the hospital?

Might I require special assistance at home after the procedure? If so, how can I arrange for the help I need?

For rectal cancer:

Should I have radiation therapy and chemotherapy before my rectal cancer surgery?

Questions To Ask After Surgery:

What is my official diagnosis based on the results of surgery and biopsy reports? Kindly provide in TNM format (T=tumor extent, N=Affected lymph node extent, M= extent of metastatic involvement; the higher the number, the more extensive the involvement respectively). For more information on the TNM staging system, please visit the Colorectal Cancer Association of Canada’s website at www.colorectal-cancer.ca/en/just-the-facts/what-cancer/

Can you explain my pathology report (laboratory test results) to me?

What is my prognosis?

What additional treatment do you recommend? Why?

What is the goal of this treatment?

Is it a standard treatment or part of a clinical trial?

What are the risks and possible side effects of treatment, both in the short term and the long term?

How will the treatment affect my daily life? Will I be able to work, exercise, engage in sexual activity and perform my usual daily activities?

How long will it be before I can go back to work after surgery? Can I work during chemotherapy?

What follow-up tests will I need, and how often will I need them? When will I be seen for a follow-up examination?

What support services are available to me? To my family?

(ii) Colostomy-Related List of Physician-Directed Questions

Click to print entire section

Patients who have had surgical treatment of their colon or rectal cancer may require a colostomy. Colostomy is a surgical procedure that brings the end of the large intestine through the abdominal wall. Stools moving through the intestine drain into a bag attached to the abdomen. Colostomy is done while you are under general anastesia. It may be done with invasive, open surgery or several small surgical cuts (laparoscopically). For the colostomy, the end of the healthy colon is brought through the abdominal wall. The edges are stitched to the skin of the abdominal wall. A bag called a stoma appliance is secured around the opening to allow stool to drain. Your colostomy may be short-term. If you have surgery on part of your large intestine, a colostomy will allow the remainder of your intestine to rest for awhile while you recover. See diagram below for illustration. Once your body has fully recovered from the initial surgery, you will have another surgery to reattach the ends of the large intestine.

An ileostomy is an opening in the belly wall that is made during surgery. The word "ileostomy" comes from the words "ileum" and "stoma." Your ileum is the lowest part of your small intestine. "Stoma" means "opening." Your ileum will pass through a stoma after surgery. Ileostomies are used to deliver waste out of the body when the colon or rectum are not working properly.

Illustration of Colostomy Procedure

Source: http://www.nlm.nih.gov/medlineplus/ency/presentations/100011_5.htm

In the event that a colostomy is required, the following list of questions are provided to assist in your discussion with the physician who is usually the surgical oncologist.

Click to print questions

Colostomy-Related List of Questions

Will I require a colostomy?

If I have a colostomy, will it be temporary or permanent?

If I have a temporary colostomy, when will I have additional surgery to have the stoma removed?

Will I be assigned a colostomy nurse to provide detailed information, answer questions and help me learn to manage it after the surgery?

What type of colostomy will I have? (Colostomy vs. Ileostomy)

Will I be required to change my diet?

How will the colostomy be placed to minimize discomfort and inconvenience?

(iii) Chemotherapy- & Biologics-Related Questions

Click to print entire section

Some patients with colorectal cancer will already have small amounts of cancer that have spread outside the colon or rectum and cannot therefore be removed by surgery. Undetectable areas of cancer outside the colon or rectum are referred to as micrometastases and cannot be detected with any of the currently available tests. The presence of micrometastases causes relapses that occur after treatment with surgery alone. Surgery is only one component in the treatment of colorectal cancer and is often followed by adjuvant chemotherapy (chemotherapy administered after surgery) to cleanse the body of micrometastases. Other patients may have macrometastases (areas of cancer outside the colon or rectum that are detectable by imagery) discovered synchronously (at the same time) with their primary tumor. These patients are considered stage IV and surgical removal of the primary may not be an option for these patients. Instead, proceeding directly to systemic therapy [the administration of drugs intravenously (or orally) for the treatment of the cancer throughout the body] may be in the best interest of the patient.

Whether you are a stage IV patient or a patient accessing adjuvant therapy, the prospect of having to endure multiple cycles of chemotherapy can be daunting to even the most resilient of patients. If, however, patients are prepared and well informed about the drugs they are administered, the experience can be less frightening and more therapeutic.

In addition to the set of treatment-related questions appearing above, a more condensed and concise list of chemotherapy-related questions can be accessed and adhered to when engaging in a conversation with your physician (who is usually a medical oncologist) about the administration of chemotherapy and biologics. Feel free to add or delete questions to the following list:

Click to print questions

Chemotherapy & Biologics-Related List of Questions

May I tape record our conversation?

What can I expect from my therapy?

What are the names of the drugs that will be used in my treatment? (Folfox, folfiri, 5FU, oxaliplatin, leucovorin, irinotecan, Xeloda, or Mytomycin C)

Is there evidence that they are more effective than other chemotherapy drugs?

How many treatments will I need?

How will the treatments be given?

Will I be able to go home afterwards?

What will I feel like after my treatments?

Will I be able to work? Will I be able to take care of my spouse and children?

What are the possible side effects of these treatments and how long do they last?

Will my hair fall out?

Will I be nauseous? If so, how can that be treated?

Will I be fatigued? How will you address that?

Will I get mouth sores? If so, how will that be addressed?

Is there anything I can do to lessen the side effects?

If I am taking chemotherapy, can I eat all kinds of foods?

Can I drink alcohol?

Can the cancer spread, even though I am on chemotherapy?

Will chemotherapy affect my sex life?

Will chemotherapy affect my fertility?

How will I know if the treatment is working?

What are the chances for remission or for a longer life?

Will I be able to take multi-vitamins or anti-oxidant therapy during chemotherapy?

Do I qualify for biological therapy in conjunction with chemotherapy?

If so, which do you recommend? (avastin, erbitux or vectibix)

If oxaliplatin is recommended, will I be accessing magnesium/calcium infusions before and after oxaliplatin infusion?

(iv) Radiotherapy-Related Questions

Click to print entire section

Radiation therapy, also called radiotherapy, is often used in conjunction with surgery and chemotherapy to treat cancers of the rectum and colon. The primary treatment for colorectal cancer is surgery. However, your doctor may also recommend radiation therapy and/or chemotherapy depending on the location and stage of the cancer. For some rectal cancers, radiation therapy is given with chemotherapy to make the tumor smaller so it can be removed more easily during surgery. Other times, radiation is given at surgery to keep the cancer from returning.

Radiation therapy is the careful use of radiation to treat cancer safely and effectively. Cancer doctors called radiation oncologists use radiation therapy to try to cure cancer, control cancer growth or relieve symptoms, such as pain. Radiation therapy works within cancer cells by damaging their ability to multiply. When these cells die, the body naturally eliminates them. Healthy cells are also affected by radiation, but they can repair themselves in ways cancer cells cannot.

The most commonly used type of radiation therapy is External Beam Radiation Therapy which involves a series of daily outpatient treatments to accurately deliver radiation to the area requiring treatment. The radiation beam usually comes from a machine called linear accelerator.

To assist you in the process of gathering information on radiotherapy, a list of questions has been provided for you to ask your radiation oncologist should you be a candidate for radiotherapy.

Click to print questions

Questions To Ask Before Radiotherapy

May I tape record our conversation?
What type and stage of colorectal cancer do I have?
What is the purpose of radiation treatment for my type of colorectal cancer?
What areas of my body will be treated with radiation?
How will the radiation therapy be given? Will it be external beam or brachytherapy (the placement of radioactive sources in or just next to a tumor)? What do the treatments feel like?
Can you explain the terms 3D-CRT (3 dimensional conformal radiation therapy), IMRT (intensity modulated radiation therapy), IGRT (image guided radiation therapy) and indicate which of these technical terms would apply to me?
For how many weeks will I receive radiation? How many treatments will I receive per week?
What are the chances that radiation therapy will work?
Can I participate in a clinical trial? If so, what is the trial testing? What are my benefits and risks?
What is the chance that the cancer will spread or come back if I do not have radiation therapy?
How will I feel after the treatments?
Will I be able to work? Will I be able to take care of my spouse and children?
What are the side effects of radiation?
Is there anything I can do to lessen the side effects?
Can I eat or drink anything I want during the weeks I have radiation?
Can I drink alcohol?
Will I need chemotherapy, surgery, or any other treatments in conjunction with radiotherapy? If so, in what order will I receive these treatments?
How soon after radiation therapy can I start receiving other treatments? Can I receive several treatments at the same time?
What are some of the support groups I can turn to during treatment?
If I have questions after I leave here, who can I call? Tel. #_____________
Will radiation therapy affect my ability to have children?

Click to print questions

Questions to Ask During Radiotherapy

How can I expect to feel during treatment and in the weeks following radiation therapy?
Can I drive myself to and from the treatment facility?
Will I be able to continue my normal activities?
What side effects may occur from the radiation and how are they managed?
Do I need a special diet during or after my treatment?
Can I exercise?
Can I engage in sexual activity?
Can I smoke or drink alcohol?
Will side effects change my appearance? If so, will the changes be permanent or temporary? If temporary, how long will they last?
Is it safe to take vitamins during treatment?
What are the reasons that I should call you at night or on a weekend?

Click to print questions

Questions to Ask After Radiotherapy Ends

How and when will you know if I am cured of cancer?
What are the reasons that I should call you after my treatment ends?
What are the chances that the cancer will come back?
How soon can I go back to my regular activities? Work? Sexual activity? Aerobic exercise?
How often do I need to return for checkups?
Are there any additional side effects I should look for? How should I manage them?

Radiation Therapy for Liver Metastases Originating From Colorectal Cancer

Colon and rectal cancers sometimes spread to the liver. Liver metastases can sometimes be removed by surgery. When surgery is not possible, however, radiation therapy may be an option. A specialized external beam radiation treatment called stereotactic body radiation therapy (SBRT) can accurately target some liver tumors. Another treatment option is selective internal radiation therapy (SIRT), an injection of radioactive particles into the blood vessels of the liver. Your radiation oncologist can discuss with you which approaches are best in your case.

(v) Questions To Ask About Treatment Side Effects

Click to print entire section

When attempting to cope with the side effects of colorectal cancer treatments, knowing which questions to ask your doctor can be critical in the management of those side effects. The following modality-specific questions will assist you in the information-gathering process related to treatment side effects.

Click to print questions

Questions to Ask About Surgery-Related Side Effects

What should I expect as far as side effects are concerned?
How long will they last?
Which side effects should I report? To whom should I report the side effects?
What kind of impact will this surgery have on my bladder and bowels?
Will the surgery damage nerves to sexual organs?
How will my sexual relations be affected and when can I resume sexual intercourse?
What kind of pain relief will I have?
If I have a lymph node dissection, will this cause me to be at risk for lymphedema (a condition that occurs when lymph nodes have been removed or damaged and lymphatic fluid collects in those tissues, causing swelling or edema in the legs) .and if so, what steps can I take to avoid it?

Click to print questions

Questions To Ask About Chemotherapy-Related Side Effects

Is there any way I can anticipate what my chemotherapy side effects will be?
How long will the side effects last?
Which side effects should I report and to whom?
What happens if my side effects prevent me from taking my medications?
What can I do to help prevent the fatigue I may experience?
Will I lose my hair as a result of my chemotherapy?
What will happen if my white blood cell count dips too low (known as leucopenia) compromising my ability to fight infections? Can we safeguard against this? Are there drugs to address this?
Can I take multi-vitamins to address or prevent some of the chemo-induced side effects?
What can I do to prevent the tingling and numbness (neuropathy) that result in the fingers and feet after oxaliplatin therapy?
Will I have magnesium and calcium infusions in the clinic to safeguard against the onset of oxaliplatin-induced neuropathy? If not, can I take magnesium/calcium supplements?
Will I lose my appetite? How can we remedy this?
Will the side effects affect my bowel movements? Can this be remedied?
Will I experience nausea/vomiting from the side effects? If so, how can this be prevented or treated?
Will I lose my appetite? How can this be remedied?
Will I experience mouth sores (mucositis)? If so, how can I safeguard against its onset? Can it be treated?
Do biologics such as avastin, erbitux and vectibix have any side effects? If so, what are they and how can I either safeguard against their onset or have them treated?
Can I safeguard against the onset of erbitux/vectibix-induced skin rash? If already developed, can it be treated?

Click to print questions

Questions To Ask About Radiotherapy-Related Side Effects

Is there any way I can anticipate what my radiation therapy side effects will be?
Will the side effects be debilitating?
Will I be able to take multi-vitamins during radiotherapy?
How will the side effects affect my bowel movements?
Will I experience any pain?
Will I experience any nausea/vomiting?
Can we safeguard against the onset of the nausea/vomiting?
Will I lose my appetite? How can this be remedied?
Will I experience any skin irritations? Will they be permanent or temporary? If temporary, for how long?
Can I control the side effects with any medications?
Can I control the side effects with a change in my diet?
How should I care for the skin that is exposed to radiation? May I bathe?

D: Lifestyle Changes

back to top

When diagnosed with colorectal cancer, changes in lifestyle habits can aid in the management and treatment of the disease. The following list of questions addresses lifestyle factors during and after the treatment of the disease.

Click to print questions

Lifestyle-Related List of Questions

Will my life change? If so, how? Will I need to make changes in my work, family life, and leisure time?
Can I drink alcoholic beverages?
Are there any special foods that I should or should not eat?
What lifestyle restrictions will I have during treatment? For example, can I exercise the way I always have? Will I have to limit visits with friends and family members?
How will my normal activities change as a result of treatment?
Can you recommend support groups in the local area with people I can talk to?
Will my sexual function be affected?
I have never exercised before, should I be taking part in an exercise program?
Should I take any over the counter medications (e.g. Antacids, aspirin) during treatment?
Should I be taking multivitamins during and after treatment?
What types of lifestyle and dietary changes may be helpful to manage my condition during and after treatment so as to improve my prognosis?
Should I schedule appointments with a nutritionist, dietician, or other health care specialists?
How will I cope if I live alone?
Will I have any physical problems?
Is there written information I can take home with me or access on lifestyle changes?
What happens if I experience depression or constant sadness?
Who can help me relay the news to my children about my colorectal cancer diagnosis?

(i) Surgery-Related List of Questions

Surgery for Colon Cancer - Colectomy

Illustration of Total Mesorectal Excision for Rectal Cancer

Physician-Directed List of Surgically-Related Questions for Colon/Rectal Tumors

Click to print questions

Questions to Ask Before Surgery:

May I tape record our discussion?

Do you have a specialty in surgical oncology?

What is the stage of my cancer?

Is surgery the standard therapy for my stage of disease?

Why do you recommend surgery for my colon/rectal cancer?

What type of surgery do you recommend (conventional vs. laparoscopic)?

Can you describe the surgery that you recommend?

What is the goal of surgery?

What are you planning to remove during surgery (the colon, nearby colon tissue, rectum, mesorectum, lymph nodes)?

How many times have you performed the recommended surgery?

Will you personally be performing the surgery?

What is your success rate and how do you define success?

What is your experience with complications? What should I do if I develop complications after surgery? Tel. # to call: _________________________

Is a biopsy part of the surgery?

How soon after surgery will I have all test results and a firm diagnosis?

Will I need blood transfusions and can my family donate blood?

Why is bowel preparation necessary for abdominal surgery?

Will I have a catheter to drain my bladder and, if so, how long will it be in?

Will you perform a pelvic lymph node dissection?

What happens if one or more of the lymph nodes is found to be positive?

Do you use drains and how will you decide?

How long will I be unable to eat?

Will I have a nasogastric tube (NG tube) after surgery?

What are my options for pain control after surgery?

Do you think I will require a temporary or permanent colostomy? If so, what will this involve? (If yes, proceed to List of Questions in Respect of Colostomy Found Below.)

If you find that the disease is more extensive than originally believed, what will you do?

Considering my age and general health, am I at a higher or lower risk for complications?

What might my recovery involve? Restrictions: _______________________ Date to resume normal activities: _________________________

What are my options besides surgery?

Are there clinical trials for my stage of disease?

Will I require adjuvant (post surgical) therapy after my surgery?

Are there any protocols for neoadjuvant (before surgery) therapy for my stage of disease?

What are the pros and cons of each type of colon/rectal surgery for the treatment of my particular cancer?

What diagnostic tests are needed prior to surgery and how will these assist in surgical planning?

Do you feel it is appropriate to perform surgery even if there are metastases present in more than one place? If yes, under which conditions?

Who will give me information about how I should get ready for surgery and a hospital stay? How long will I be in the hospital?

Might I require special assistance at home after the procedure? If so, how can I arrange for the help I need?

For rectal cancer:

Should I have radiation therapy and chemotherapy before my rectal cancer surgery?

Questions To Ask After Surgery:

Can you explain my pathology report (laboratory test results) to me?

What is my prognosis?

What additional treatment do you recommend? Why?

What is the goal of this treatment?

Is it a standard treatment or part of a clinical trial?

What are the risks and possible side effects of treatment, both in the short term and the long term?

How will the treatment affect my daily life? Will I be able to work, exercise, engage in sexual activity and perform my usual daily activities?

How long will it be before I can go back to work after surgery? Can I work during chemotherapy?

What follow-up tests will I need, and how often will I need them? When will I be seen for a follow-up examination?

What support services are available to me? To my family?

(ii) Colostomy-Related List of Physician-Directed Questions

Illustration of Colostomy Procedure

Click to print questions

Colostomy-Related List of Questions

Will I require a colostomy?

If I have a colostomy, will it be temporary or permanent?

If I have a temporary colostomy, when will I have additional surgery to have the stoma removed?

Will I be assigned a colostomy nurse to provide detailed information, answer questions and help me learn to manage it after the surgery?

What type of colostomy will I have? (Colostomy vs. Ileostomy)

Will I be required to change my diet?

How will the colostomy be placed to minimize discomfort and inconvenience?

(iii) Chemotherapy- & Biologics-Related Questions

Click to print questions

Chemotherapy & Biologics-Related List of Questions

May I tape record our conversation?

What can I expect from my therapy?

What are the names of the drugs that will be used in my treatment? (Folfox, folfiri, 5FU, oxaliplatin, leucovorin, irinotecan, Xeloda, or Mytomycin C)

Is there evidence that they are more effective than other chemotherapy drugs?

How many treatments will I need?

How will the treatments be given?

Will I be able to go home afterwards?

What will I feel like after my treatments?

Will I be able to work? Will I be able to take care of my spouse and children?

What are the possible side effects of these treatments and how long do they last?

Will my hair fall out?

Will I be nauseous? If so, how can that be treated?

Will I be fatigued? How will you address that?

Will I get mouth sores? If so, how will that be addressed?

Is there anything I can do to lessen the side effects?

If I am taking chemotherapy, can I eat all kinds of foods?

Can I drink alcohol?

Can the cancer spread, even though I am on chemotherapy?

Will chemotherapy affect my sex life?

Will chemotherapy affect my fertility?

How will I know if the treatment is working?

What are the chances for remission or for a longer life?

Will I be able to take multi-vitamins or anti-oxidant therapy during chemotherapy?

Do I qualify for biological therapy in conjunction with chemotherapy?

If so, which do you recommend? (avastin, erbitux or vectibix)

If oxaliplatin is recommended, will I be accessing magnesium/calcium infusions before and after oxaliplatin infusion?

(iv) Radiotherapy-Related Questions

Click to print questions

Questions To Ask Before Radiotherapy

May I tape record our conversation?
What type and stage of colorectal cancer do I have?
What is the purpose of radiation treatment for my type of colorectal cancer?
What areas of my body will be treated with radiation?
How will the radiation therapy be given? Will it be external beam or brachytherapy (the placement of radioactive sources in or just next to a tumor)? What do the treatments feel like?
Can you explain the terms 3D-CRT (3 dimensional conformal radiation therapy), IMRT (intensity modulated radiation therapy), IGRT (image guided radiation therapy) and indicate which of these technical terms would apply to me?
For how many weeks will I receive radiation? How many treatments will I receive per week?
What are the chances that radiation therapy will work?
Can I participate in a clinical trial? If so, what is the trial testing? What are my benefits and risks?
What is the chance that the cancer will spread or come back if I do not have radiation therapy?
How will I feel after the treatments?
Will I be able to work? Will I be able to take care of my spouse and children?
What are the side effects of radiation?
Is there anything I can do to lessen the side effects?
Can I eat or drink anything I want during the weeks I have radiation?
Can I drink alcohol?
Will I need chemotherapy, surgery, or any other treatments in conjunction with radiotherapy? If so, in what order will I receive these treatments?
How soon after radiation therapy can I start receiving other treatments? Can I receive several treatments at the same time?
What are some of the support groups I can turn to during treatment?
If I have questions after I leave here, who can I call? Tel. #_____________
Will radiation therapy affect my ability to have children?

Click to print questions

Questions to Ask During Radiotherapy

How can I expect to feel during treatment and in the weeks following radiation therapy?
Can I drive myself to and from the treatment facility?
Will I be able to continue my normal activities?
What side effects may occur from the radiation and how are they managed?
Do I need a special diet during or after my treatment?
Can I exercise?
Can I engage in sexual activity?
Can I smoke or drink alcohol?
Will side effects change my appearance? If so, will the changes be permanent or temporary? If temporary, how long will they last?
Is it safe to take vitamins during treatment?
What are the reasons that I should call you at night or on a weekend?

Click to print questions

Questions to Ask After Radiotherapy Ends

How and when will you know if I am cured of cancer?
What are the reasons that I should call you after my treatment ends?
What are the chances that the cancer will come back?
How soon can I go back to my regular activities? Work? Sexual activity? Aerobic exercise?
How often do I need to return for checkups?
Are there any additional side effects I should look for? How should I manage them?

Radiation Therapy for Liver Metastases Originating From Colorectal Cancer

(v) Questions To Ask About Treatment Side Effects

Click to print questions

Questions to Ask About Surgery-Related Side Effects

What should I expect as far as side effects are concerned?
How long will they last?
Which side effects should I report? To whom should I report the side effects?
What kind of impact will this surgery have on my bladder and bowels?
Will the surgery damage nerves to sexual organs?
How will my sexual relations be affected and when can I resume sexual intercourse?
What kind of pain relief will I have?
If I have a lymph node dissection, will this cause me to be at risk for lymphedema (a condition that occurs when lymph nodes have been removed or damaged and lymphatic fluid collects in those tissues, causing swelling or edema in the legs) .and if so, what steps can I take to avoid it?

Click to print questions

Questions To Ask About Chemotherapy-Related Side Effects

Is there any way I can anticipate what my chemotherapy side effects will be?
How long will the side effects last?
Which side effects should I report and to whom?
What happens if my side effects prevent me from taking my medications?
What can I do to help prevent the fatigue I may experience?
Will I lose my hair as a result of my chemotherapy?
What will happen if my white blood cell count dips too low (known as leucopenia) compromising my ability to fight infections? Can we safeguard against this? Are there drugs to address this?
Can I take multi-vitamins to address or prevent some of the chemo-induced side effects?
What can I do to prevent the tingling and numbness (neuropathy) that result in the fingers and feet after oxaliplatin therapy?
Will I have magnesium and calcium infusions in the clinic to safeguard against the onset of oxaliplatin-induced neuropathy? If not, can I take magnesium/calcium supplements?
Will I lose my appetite? How can we remedy this?
Will the side effects affect my bowel movements? Can this be remedied?
Will I experience nausea/vomiting from the side effects? If so, how can this be prevented or treated?
Will I lose my appetite? How can this be remedied?
Will I experience mouth sores (mucositis)? If so, how can I safeguard against its onset? Can it be treated?
Do biologics such as avastin, erbitux and vectibix have any side effects? If so, what are they and how can I either safeguard against their onset or have them treated?
Can I safeguard against the onset of erbitux/vectibix-induced skin rash? If already developed, can it be treated?

Click to print questions

Questions To Ask About Radiotherapy-Related Side Effects

Is there any way I can anticipate what my radiation therapy side effects will be?
Will the side effects be debilitating?
Will I be able to take multi-vitamins during radiotherapy?
How will the side effects affect my bowel movements?
Will I experience any pain?
Will I experience any nausea/vomiting?
Can we safeguard against the onset of the nausea/vomiting?
Will I lose my appetite? How can this be remedied?
Will I experience any skin irritations? Will they be permanent or temporary? If temporary, for how long?
Can I control the side effects with any medications?
Can I control the side effects with a change in my diet?
How should I care for the skin that is exposed to radiation? May I bathe?

IV. Securing a Second Opinion

Introduction

Click to print entire section

Cancer treatment can be quite complex. Not surprisingly, some patients may not know where to start asking questions and, naturally, may wonder if another physician might offer something different in the way of treatment. Patients may find themselves wanting to talk with another doctor who can look at their test results, talk to them about their personal situation, and perhaps give them a different take on their case.

Some patients may find it difficult to tell their doctors that they would like to seek out a second opinion. Knowing that it is quite common for patients to seek out a second opinion may help in the pursuit of that second opinion. And most doctors are comfortable with the request. If you are uncertain as to how to begin, the following list of questions may aid in addressing the subject with your doctor:

Click to print questions

Before we start treatment, I would like to get a second opinion. Will you assist me with that?
If you had my type of cancer, who would you see for a second opinion?
I think I would like to speak to another doctor to be sure I have all my bases covered.
I’m thinking of seeking out a second opinion. Can you recommend someone? If so, who would you recommend and why?

Securing a second opinion can be facilitated through a referral from your doctor or you may wish to seek out a second opinion on your own and then have either your family doctor forward or the current treating physician forward the referral.

Once you have decided who you will see for your second opinion, ask that your medical records, original x-rays, and all test results be shared with the new doctor. This avoids having to repeat everything all over again. Having taken copies of all your test results throughout the process may facilitate the sharing of those results with your new doctor.

V. Securing Information From Your Doctor That You Will Require Later

Introduction

Click to print entire section

At some point – even if you do not change doctors before or during treatment – you may find yourself in the office of a new doctor involved in the treatment or management of your disease. It is important that you be able to give your new doctor the exact details of your diagnosis and treatment. The following checklist will aid in the sharing of your information with the new doctor and it is recommended that you always keep copies for yourself:

A copy of the pathology report from any biopsy or surgery
If you have had surgery, a copy of the surgical report
If you have been admitted to hospital, a copy of the discharge summary that every doctor must prepare when patients are sent home
If you have had radiation therapy, a final summary of the dose and field
Since some drugs can have long terms side effects, a list of all your drugs, drug doses, and when you took them (including over-the-counter drugs)

You may ask your treating doctor’s office staff for copies of your records. Kindly bear in mind that doctors may relocate, depart on vacation, or close their offices due to holidays. Hence, asking for your records as soon as they are generated is advisable. If the treatment or test took place in a hospital, you may need to contact the hospital’s medical records department to determine how to go about securing your records. This information should be kept with you for life, since all future doctors’ visits will be requiring the information.

Remember that you have the right to a second opinion about your diagnosis and the recommended treatment plan. Asking for a second opinion does not imply that you do not like or trust your doctor. Doctors understand you need to feel that every possibility for the best treatment has been explored. You may also ask your doctor if they have consulted with other specialists at their treatment center for additional recommendations in respect of your disease.

VI. Conclusion & Suggestions

Introduction

Determining which treatment modality is right for the treatment of your colorectal cancer is important, as well as asking your doctor about surgical procedures, associated treatment side effects and potential risks are critical to making informed decisions about the disease. Exploring the emotional and physical side effects of colorectal cancer therapies will give you some insight into potential problems before they occur. Although managing and living with these side effects may indeed be difficult, at least you will be aware and informed should they occur.

Your doctor and the rest of your health care team are there to help you and support you through what can be a difficult time. Patients who have cancer likely do want to build good relationships with their treating physicians. A good relationship however, doesn’t just happen – it takes care and effort on both sides.

Ensure that all your concerns and questions, no matter how small, have been addressed. It may require more than one visit to discuss al of your concerns, and new questions may arise at a later time. It may be difficult to remember everything your doctor says to you. This is why most patients find it helpful to do any or all of the following:

Bring a family member or friend with you to the appointments. It helps to have another person hear what is said and may think of questions to ask
You or your attendee may take notes during the appointment
Write out your questions or concerns before the appointment so that you will not forget what to ask of the physician
Either you or your attendee may wish to write down the answers you receive from the physician and ensure you understand what you are hearing. Ask for clarification if necessary
Do not be afraid to ask your questions or ask where you can find more information about what you are discussing. You are most certainly entitled to know.
You may wish to tape record the conversations had with your physician (assuming you receive permission to do so from the physician) so as to replay the information at a later time

As in any relationship, clear and honest communication is the key to success. The provision of proper tools can help facilitate this and render the entire treatment process less daunting and more holistically therapeutic. For more information on the treatment and management of colorectal cancer, do not hesitate to visit the Colorectal Cancer Association of Canada’s website at www.colorectal-cancer.ca/en/treating-cancer/treatment-cancer/# or access the services of one of our many nationwide cancer coaches by visiting the website at www.colorectal-cancer.ca/en/find-support/cancer-coaches/ .

VII. Online Sources & References

Journal of the American Medical Association. Vol. 287, #3, pp.321-328.

American Cancer Society, http://www.cancer.org/docroot/lrn/lrn_0.asp Canadian Cancer Society

Canadian Cancer Society, http://www.cancer.ca/canada-wide/about%20cancer/types%20of%20cancer/what%20is%20colorectal%20cancer.aspx?sc_lang=en

National Cancer Institute, http://www.cancer.gov/cancertopics/types/colon-and-rectal

GI Channel, http://gi.healthcommunities.com/patient-information-gi/index.shtml

Colon Cancer News, www.coloncancernews.org/docs/pdf/questions_to_ask_your_doctor.pdf

Radiation Therapy Answers, www.rtanswers.org/treatment/disease/colon_cancer.htm

Centre For Disease Control, Division of Cancer Prevention and Control, National Center for Chronic Disease Prevention and Health Promotion, www.cdc.gov/cancer/colorectal/basic_info/screening/questions.htm

Caring 4 Cancer, www.caring4cancer.com/go/colorectal/basics/questions-to-ask-your-doctor.htm

Oncolink, http://oncolink.com/types/article.cfm?c=5&s=11&ss=605&id=9457&p=3

Riverside Health Reference, http://www.riversideonline.com/health_reference/Cancer/DS00035.cfm

Colorectal Cancer Association of Canada (CCAC) http://www.colorectal-cancer.ca